Distonia Doc

 Some of yous know that I have been having a rough time ...well I wasn't scheduled to see the Distonia Doc  until September but they had a cancellation which rarely happens so I got to go yesterday.

The appointment went well and it seemed clear that I have some sort of distonia so clear in fact that the doctor thought I was one of the other doctors patients.

Anyway , the doctor did not know what kind I have for sure, but he has some ideas. I will probably need more testing and genetic testing.

Right now I am trying some different stuff with the Ldopa to see if it does anything.

And....go from there.



     The below drawing is my response to all the meanness that was going on my friends facebook pages this week. 

   Some happy pandas enjoying the rain.

 More glowing daisies.

Also I would like to say thank you for all the prayers , It means so much and the cards I got this week....I have been sad and it makes a really big difference. I feel so much love , if love could cure a person I would be beyond cured I would be wonder woman!

Cheerful Flowers In Spite Of Pain

In spite of the hard days I have had lately I still have been drawing, most of these except one are from the past 2 weeks.

Sometimes I get lazy and don't put my drawings on here and they get new homes and no one else gets to see them.

I force myself to meditate on Gods creation when I am sad and it helps.

Flowers...a meditation on the lovely.

The above black and white ones fit together.

Here are some questions I get a lot about my drawings...
Why colored pencil and not paint?  Because I drop stuff often paint would be a complete mess...the daisy drawing , it happened 23 times.

How long does it take?  Pretty much 2 hours...sometimes 2 and a half but not any longer unless it is big like 24x36 .

Do you start with regular pencil?  No, different colors have different base colors like for a red primrose , purple or blue. Yellow is brown, burnt orange, or sometimes dark red.

Holes In The Day

 Since last Tuesday things have been pretty rough.
     Lots of seizure like events  (distonic storms?)


Imagine you are talking with someone and all of a sudden you went forward into the future , maybe they quit talking to you maybe they are not even sitting by you anymore.

Now imagine this happening fifty times.....a big chunk of you day just went bye-bye.

Most people don't black out but I do...I have been told maybe I pinch something off in my neck.

So...the Ldopa was increased so has the nausea.

I did not think I could stand it if I went backwards....but I am not God and for some reason it happened.

Yesterday I went to the lake with family and friends. I still enjoyed the day , I just wish it wasn't full of holes.

Trusting is God is what I must do ....and pray.
I can do no other.....
So help me God.

Art Show

Last saturday I had an art show at the Moonshadow Cafe .    It was a lot of fun and I stayed until 2:00 and my dad manned the booth the rest of the day.  I had some free drawings for anyone that wanted them and gave them all away except 4.  You can see photos from the art show on my facebook

https://www.facebook.com/jessica.riley.5492

Just scroll down. 

( I am on a different computer so that is the easiest way for me to share the pics)


I felt rather rough this week....I think because I caught a cold. 

Life

 There are a good many things I cannot write about on this blog and it has made posting very hard.

I have had some very rough days and some better days.

I have had really happy times...my cousin's wedding and the family reunion, and some really sad things ( what I cannot share with the world)

I want to be brave.

I want to be strong.

I want to be patient.

I want to carry on.


But I feel like a wimp, the opposite of brave.

I feel so weak , I can't stand long.

I have to be patient, but the wait causes pain.

I must carry on, that is my only choice.

So I pray because I can't do anything else about it.

My hope is that love shall cover a multitude of sin.

But no matter what I know God knows better than me, and I would be a fool to think I know as much as God. 

Joy still comes. 
It was overflowing yesterday! I went to my Grandpa's house on the lake with friends and family and I ate some mudbugs. Lots of mudbugs!  And Mr. Smith played some music and I got to play the tambourine and my Dad's log drum thing. Also I got to ride with my sister Katie and Ethan which for me was the best.
 

God, What Am I Supposed To Do?

  I have been doing very rough lately and .....pretty much everything is listed as a side effect.  I do not want to go off this drug. I don't want to go back to the way I was.....I am afraid.

I also know my primary doctor does not really know much about this drug or about dystonia.

The neurologist said he did not know what to do with me that I was a rare case...he said I needed to see a specialist.

Johns Hopkins was booked until December....they said I should see someone before that so they referred me to a Parkinsons clinic that also deals with dystonia.

The paper work was mailed so now I wait for an appointment.

I wish it to come soon.

Dystonia of what sort?

 That is what I am going to ask the movement disorder doctor when I see him.

I am thinking it cannot be completely Ldopa responsive.....I think my leg would of gotten better by now.

 So Ldopa makes a big difference .....maybe there is something else out there.

I don't know I am not any sort of doctor.

I wish things did not have to take so long...I hate waiting to get appointments .

But thats just part of life.

I sure don't know what everyone else has been eating or drinking that makes time go so fast for them.

Time is so slow ....it is a drag .

The last two months have taken like six months.

Time does not go fast for me even when things are o.k. , I don't think it ever will.
That thing people get when they are older that makes time go fast must be acquired in some way.

Someway I sure don't know.

Well, things really are o.k..... time is not flying but I guess I will just enjoy it and take time as it is.